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A method commonly used in health care research is the waiting room (WR) survey. While patients are waiting for their appointment, they are asked to complete a questionnaire measuring their attitudes, behaviors and other characteristics. In this paper we synthesize practical guidelines for WR surveys by comparing the method with two similar approaches: public intercept (PI) surveys and drop-off-pick-up (DOPU) surveys. In this comparison we use the Total Survey Error approach Groves (Survey Methodology, Wiley, New York, 2004); (Groves in Public Opinion Quarterly 74(5): 849-879, 2010) and apply it to three case examples in which one of the three surveys is used. We take into account measurement (validity, measurement- and processing error) and representation (coverage-, sampling- and nonresponse error). From our review, we conclude that waiting room surveys, though limited to patients and their caregivers, can provide useful information on patients' perspective on health care. Response rates in waiting rooms are usually high, but often not even reported. We recommend adjustment for sampling bias by taking into account the number of visits to the hospital per respondent and sample times proportionate to the number of sample members expected on a particular time. These surveys also allow for collection of para-data; i.e., relevant information in the circumstances of a request to participate in survey research, and behavior of surveyors can easily be controlled, or investigated in an experimental design. [ABSTRACT FROM AUTHOR]

Introduction: Understanding clinical trial experiences can illuminate opportunities to optimize trial design and management, with potential benefits for recruitment and retention. This study sought to better understand clinical trial participant experiences and attitudes within spinal muscular atrophy (SMA), and how the evolving treatment landscape and participant characteristics may predict attitudes. Methods: A survey was developed following a review of published literature and discussions with caregivers of SMA trial participants. This was distributed via email to known trial participants in Cure SMA's database, announcements in Cure SMA's newsletter, and emails to SMA clinical trial principal investigators. Results: Seventy complete surveys reflecting unique clinical trial experiences were included in analysis. Responses revealed positive attitudes about clinical trial management overall. Top motivators for trial participation included clinical benefit, investigational drug access, and the opportunity to help others. Top concerns were safety, whether benefits would justify risks, and concerns about pain accompanying tests. The greatest stressors were fear of pain, adverse event concerns, and challenges managing medical complications of SMA. Top benefits of trial participation were hope for a better future, helping others, and relationships with the study team. In regression analysis, participant gender, age, and race all emerged as significant predictors (p < 0.05) of motivators, concerns, stressors, and benefits, as did respondent type, knowledge about SMA, distance to the trial site, and treatment era. Top recommendations for improving study management all related to receiving more information. Conclusion: This research provides new perspective on patient experiences in SMA clinical trials. It underscores the importance of information and efforts to anticipate and accommodate participant needs. These findings may inform study design and interactions with research participants. They may become especially important in supporting recruitment and retention as more treatment options become available. Plain Language Summary: Clinical trials can be stressful experiences for patients and their caregivers, especially when participants are affected by serious diseases. By understanding trial participants' attitudes and experiences, researchers may be better able to accommodate their interests when designing and conducting research studies. This study sought insight into attitudes and experiences of spinal muscular atrophy (SMA) clinical trial participants by surveying people who participated in SMA clinical trials in the USA. The data used in analysis reflected 70 unique clinical trial experiences. Survey responses revealed positive attitudes about clinical trial management overall. Top motivators for trial participation included clinical benefit, investigational drug access, and the opportunity to help others. Top concerns were safety, whether benefits would justify risks, and concerns about pain accompanying tests. The greatest stressors were fear of pain, adverse event concerns, and challenges managing medical complications of SMA. Top benefits of trial participation were hope for a better future, helping others, and relationships with the study team. Whether or not specific motivators, concerns, stressors, and benefits were important was predicted by participant gender, age, and race, as well as respondent type (participant or caregiver), knowledge about SMA, distance to the trial site, and treatment era. Top recommendations for improving study management all related to receiving more information. This research provides new perspective on patient experiences in SMA clinical trials, and may be used to inform future study design and interactions with research participants. [ABSTRACT FROM AUTHOR]

Background: Cancer gene panel testing is available in Ireland. The need for a clear strategy to deal with patient information generated from tumour genomic testing is recognised as a challenge in the National Cancer Strategy. However, the public's attitude and opinions regarding these results is not known in Ireland. Aims: This prospective questionnaire study assessed the knowledge and opinions of patients in a national oncology centre, surrounding cancer gene panel testing. Methods: An anonymised modified validated questionnaire was completed by volunteering patients in the medical oncology department. It comprised 14 questions which assessed patient's familiarity, intention, benefits and concerns associated with tumour genetic testing using a four-point Likert scale. Patients recorded their primary cancer diagnosis and family cancer history. Results: Eighty-four patients completed the questionnaire with 77 (92%) patients declaring their primary cancer diagnosis. The median age was 56 (range 26 to 83) years. Overall, 42% (n = 35) of oncology patients were familiar/somewhat familiar with testing and 90% (n = 76) stated they would avail of genetic testing if available. Patients with breast cancer were no more likely to avail of genetic testing when compared with the non-breast cancer cohort (n = 21 vs. 56, p = 0.58) though they identified concerns with potential discrimination. Conclusion: This is the first prospective Irish study to assess opinions surrounding cancer gene results. Addressing patient's lack of information as regards genetic testing is the first step in establishing a national cancer genetics testing programme in Ireland. [ABSTRACT FROM AUTHOR]

Background: As more health care organizations integrate social needs screening and navigation programs into clinical care delivery, the patient perspective is necessary to guide implementation and achieve patient-centered care.Objectives: To examine patients' perceptions of whether social needs affect health and attitudes toward healthcare system efforts to screen for and address social needs.Research Design: Multi-site, self-administered survey to assess (1) patient perceptions of the health impact of commonly identified social needs; (2) experience of social needs; (3) degree of support for a health system addressing social needs, including which social needs should be screened for and intervened upon; and (4) attitudes toward a health system utilizing resources to address social needs. Analyses were conducted using multivariable logistic regression models with clinic site cluster adjustment.Subjects: Adult patients at seven primary care clinics within a large, integrated health system in Southern California.Main Measures: Survey measures of experience with, acceptability of, and attitudes toward clinical social determinants of health screening and navigation.Key Results: A total of 1161 patients participated, representing a 79% response rate. Most respondents (69%) agreed that social needs impact health and agreed their health system should ask about social needs (85%) and help address social needs (88%). Patients with social needs in the last year were more likely to (1) agree social needs impact health (OR 10.2, p < 0.001), (2) support their health system asking patients about social needs (OR 3.7, p < 0.001), and (3) support addressing patient social needs (OR 3.5, p < 0.001). Differences by social need history, gender, age, race, ethnicity, and education were found.Conclusions: Most patients at a large integrated health system supported clinical social needs screening and intervention. Differences in attitudes by social need history, gender, age, race, ethnicity, and education may indicate opportunities to develop more equitable, patient-centered approaches to addressing social needs. [ABSTRACT FROM AUTHOR]

The coronavirus disease 2019 (COVID-19) pandemic has driven a broader adoption of telemedicine (TM). We aim to describe adult congenital heart disease (ACHD) patient experiences with TM and explore factors associated with positive attitude toward future TM visits. This is a cross-sectional, single-center study in an outpatient ACHD clinic from February to June, 2022. Between-group comparisons were made using Wilcoxon-Rank Sum, Chi-Square, or Fisher-Exact tests. Univariate logistic regression was performed for variables that could correlate with a “positive” attitude toward future TM visits. Significance was determined using an alpha level of 0.05. Of 262 patients (median age 33 years, 55% female, 81% White), 115 (44%) had a prior TM visit and 110 (96%) reported a positive experience. There were 64 (24%) with a positive attitude toward future TM visits. Concerns include lack of cardiac testing and limited quality of visit. Patients with visits every 3–6 months (Odds Ratio [OR] 2.44; p < 0.01) and prior TM visit (OR 1.89; p = 0.03) had higher odds of a positive attitude toward future TM, whereas males had lower odds (OR 0.53; p = 0.04). Age, annual income, disease complexity, distance from clinic, and employment status were not associated. There is high rate of satisfaction with TM among ACHD patients but only one-quarter indicated interest in using TM in the future. Factors associated with interest in TM visits are identified, and together with patient feedback, can be used to understand potential role of TM for the ACHD population in the post-pandemic era. [ABSTRACT FROM AUTHOR]

Background: From 20 to 65 % of older adults receiving polypharmacy take at least one potentially inappropriate medication (PIM), leading to a high risk of adverse drug reactions. The term deprescribing was coined to describe a process of optimization of drug regimens through the withdrawal of PIMs. There is a paucity of evidence on the attitudes, beliefs and willingness of hospitalized patients towards deprescribing.Objective: To measure at hospital discharge inpatients' attitudes and beliefs towards polypharmacy and the potential withdrawal of one or more of their medications using the PATD (Patients' Attitudes Towards Deprescribing) questionnaire and determine if they are associated with participant characteristics.Setting: Geriatric and internal medicine wards in an Italian teaching hospital.Method: Administration of the PATD questionnaire (developed and validated in an Australian outpatient setting, translated and adapted to the Italian setting for this study) to a consecutive sample of 100 older (aged ≥65 years) inpatients with polypharmacy who were interviewed by a nurse or pharmacist at the time of hospital discharge.Main Outcome Measure: Older patients' attitudes and beliefs towards reducing medications and participant characteristics.Results: Eighty-nine percent of patients surveyed would like to reduce the number of daily medications. The desire for deprescribing was not associated with age, sex or number of medications or medical conditions; older patients were less aware of the reasons for taking medications.Conclusion: The majority of hospitalized older adults with polypharmacy think they are taking a lot of drugs and would like to reduce this number. Older adults should not be considered a major limitation on deprescribing interventions. Future research should examine this issue with qualitative studies in order to gain a more in-depth understanding and explore how these findings can be translated into a multidisciplinary deprescribing process. [ABSTRACT FROM AUTHOR]

The use of the bedside to teach the art of clinical medicine is controversial. Rising student numbers can limit patient availability. Studies examining inpatient attitudes to bedside teaching are few. We examined inpatients’ attitudes to bedside teaching of undergraduate medical students. The study was carried out in a 439-bed teaching hospital. A questionnaire, numerically scored (0–10), was prospectively administered to 102 consecutive patients involved in bedside teaching of undergraduate medical students. The results were available from 92 patients. Patients enjoyed the teaching process (mean score 9.13 ± 1.16) and benefited from a better understanding of their illness (7.11 ± 2.57). Patients appreciated their role in educating future doctors (mean score 9.52 ± 1.11) but demonstrated less confidence in their personal contribution to the teaching process (7.81 ± 1.89). Inpatients are very willing participants in bedside teaching of undergraduate medical students. [ABSTRACT FROM AUTHOR]

Background This study aimed to assess patient attitudes as part of the planning process for a large-scale effort to collect genetic samples for research from excess clinical blood specimens (‘DNA Databank’ project). Method A pre-tested, 38-item questionnaire was mailed to a random sample of 5,000 inpatients, outpatients, and emergency department patients. Results Approximately 20% of patients responded ( n = 1003). Most were comfortable with anonymized genetic information being used for research (89.3%) and supported the potential benefits (98.7%). A binary logistic regression on the level of comfort with the DNA program shows that the variability in respondents’ feelings about the program can best be explained by beliefs, age, and health status. Respondents were attitudinally segmented into 5 distinct categories. Conclusions These data indicate general acceptance among respondents, but a subset of the population would be opposed to the program. This reinforces the need to broadly and continuously communicate with patients about the program and the ability to exclude a given sample. The effects of prior beliefs would benefit from further exploration. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To lay the groundwork for a better understanding of patient views on medical confidentiality. DESIGN: Studies were found by searching medline, bioethicsline, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients' confidentiality views and conduct were included. MAIN RESULTS: Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information. CONCLUSIONS: Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To examine patient and physician preferences in regard to 5 colorectal cancer screening alternatives endorsed by a 1997 expert panel, determine the impact of patient and physician values regarding certain test features on screening preference, and assess physicians' perceptions of patients' values. DESIGN: Cross-sectional survey. SETTING: A general internal medicine practice at an academic medical center in 1998. PARTICIPANTS: Patients (N = 217; 76% response rate) and physicians (N = 39; 87% response rate) at the study setting. MEASUREMENTS AND MAIN RESULTS: Patients preferred fecal occult blood testing (43%) or colonoscopy (40%). In patients for whom accuracy was the most important test feature, colonoscopy (62%) was the preferred screening method. Patients for whom invasive test features were more important preferred fecal occult blood testing (76%; P < .001). Patients and physicians were similar in their values regarding the various test features. However, there was a significant difference between physicians' perceptions of which test features were important to patients compared with the patients' actual responses (P < .001). The largest discrepancy was for accuracy (patient actual 54% vs physician opinion 15%) and discomfort (patient actual 15% vs physician opinion 64%). CONCLUSIONS: Patients have distinct preferences for colorectal cancer screening tests that are associated with the importance placed on certain test features. Physicians incorrectly perceive those factors that are important to patients. Physicians should incorporate patient values in regard to certain test features when discussing colorectal cancer screening with their patients and when eliciting their screening preferences. [ABSTRACT FROM AUTHOR]

We used a cross-sectional survey to compare the views of African-American and white adult primary care patients (N = 76) regarding the importance of various aspects of depression care. Patients were asked to rate the importance of 126 aspects of depression care (derived from attitudinal domains identified in focus groups) on a 5-point Likert scale. The 30 most important items came from 9 domains: 1) health professionals' interpersonal skills, 2) primary care provider recognition of depression, 3) treatment effectiveness, 4) treatment problems, 5) patient understanding about treatment, 6) intrinsic spirituality, 7) financial access, 8) life experiences, and 9) social support. African-American and white patients rated most aspects of depression care as similarly important, except that the odds of rating spirituality as extremely important for depression care were 3 times higher for African Americans than the odds for whites. [ABSTRACT FROM AUTHOR]

Objective: Little is known about the significance of patient-perceived overmedication. We sought to determine its prevalence and relation to medication compliance, adverse drug reactions, health-related quality of life (HRQOL), and burden of illness.Design: Analysis of self-reported questionnaire data. PATIENTS/PARTICIPANT: There were 1,648 participants in a longitudinal study of male veterans.Intervention: Participants listed each of their medications with indication, missed doses, adverse reactions, and whether their amount of medication was "too much, the right amount, or too little." The survey included questions about medication adherence, "problems with medications," common symptoms, and screening questions for a number of chronic conditions. We assessed HRQOL with the Multiple Outcomes Study 36-Item Short Form Health Study (SF-36).Measurements and Main Results: Of the 1,256 respondents, 1,007 (80%) had taken medication within 4 weeks. Forty (4%) thought they were taking too much. They reported a 1.6-fold increase in prescription medications, a 5-8 fold increase in adverse effects, a 1.5-2 fold decrease in compliance, an increase in each of seven measured symptoms, and a decrease in six of eight SF-36 domains (p < .05 for all comparisons), the exceptions being the mental health and role-emotional scales. There was also a slight increase in the report of any chronic illness (95% vs 86%, p > .05).Conclusions: Patient perception of overmedication correlates with self-report of decreased compliance, adverse drug reactions, decreased HRQOL, and an increase in symptomatology that is compatible with unrecognized side effects of medication. Such patients warrant careful evaluation. [ABSTRACT FROM AUTHOR]

Objectives: The point system used to distribute scarce transplantable kidneys places great emphasis on antigen matching. This contributes to increased waiting times for African Americans, who have a disproportionate share of rare antigens. We conducted a pilot study to explore the understanding and attitudes of kidney transplant candidates toward the way the transplant allocation system trades off between antigen matching and waiting time.Measurements and Main Results: We performed semi-structured interviews of a convenience sample of 33 patients awaiting transplants in Philadelphia and its surrounding suburbs. Patients had a number of misconceptions about the transplant allocation system. Many incorrectly thought, for example, that quality of life and financial status influence which patients on the waiting list receive available organs. Despite these and other misconceptions, the majority of patients thought the allocation system was fair. However, many African Americans thought the system was biased against them because of their race. After hearing about how the transplant system factors antigen matching and waiting time into organ allocation, the majority of subjects still felt the system was fair. After hearing that the emphasis on antigen matching causes African Americans to wait twice as long as whites, a larger number of subjects thought the system was unfair. Nevertheless, few thought the system should be changed. Even African American patients who felt the system was unfair still approved of the emphasis on antigen matching out of a desire to have a successful kidney transplant.Conclusions: We found that most of the interviewed patients awaiting kidney transplant thought the system should continue to emphasize antigen matching. Although attitudes toward the allocation system differed by race, with African American patients more suspicious of the system, the importance patients placed on antigen matching did not appear to differ by race. [ABSTRACT FROM AUTHOR]

Objectives: To identify attitudes that influence patient help-seeking behavior and aspects of treatment that influence patient preferences for management of depression.Design: Three focus group discussions (two patient groups stratified by race and one professional group). Questions addressed experience with depression, help-seeking behaviors, treatment preferences, and perceived barriers to mental health care.Setting: Academic medical center.Patients/participants: Eight black patients and eight white patients with depression: seven health care professionals (four physicians and three social workers).Measurements and Main Results: Discussions were audiotaped, transcribed, and reviewed independently by two investigators to identify and group distinct comments into categories with specific themes. Differences were adjudicated by a third investigator. Comments within categories were then checked for relevance and consistency by a health services researcher and a psychiatrist. More than 90% of the 806 comments could be grouped into one of 16 categories. Black patients raised more concerns than white patients regarding spirituality and stigma. Patients made more comments than professionals regarding the impact of spirituality, social support systems, coping strategies, life experiences, patient-provider relationships, and attributes of specific treatments. They discussed the role these factors played in their help-seeking behavior and adherence to treatment.Conclusions: In-depth focus group discussions with depressed patients can provide valuable and unique information about patient experiences and concerns regarding treatment for depression. Clinicians, researchers, and policymakers need to incorporate the range of factors identified by patients into their decision making for individuals with depression. [ABSTRACT FROM AUTHOR]

Objective: To assess outpatients' attitudes toward and understanding of a standard living will.Design: Survey using a self-administered questionnaire that patients completed after they had read a sample living will.Setting: General medicine clinic of a Department of Veterans Affairs medical center.Patients: Two hundred fourteen patients (85% of those approached) attending a continuity care clinic appointment. Eighty-seven percent were men; mean age was 60 years.Measurements and Main Results: Patients' attitudes toward living wills, understanding of the terminology contained in living wills, desire to discuss living wills with their doctors, and desire to prepare a living will.Results: Seventy-two percent of the patients had prior knowledge of living wills, though only 53% had discussed the topic with family members and only 14% with physicians. Half felt that the living will terminology should be simplified, and 55% were unable to identify the correct definition for at least one commonly used term. Desire to prepare a living will was positively associated with better understanding of the sample document and previous knowledge of and exposure to living wills, and was negatively associated with concern about its use and revocability (all p < 0.001). Patients who reported poor understanding of the living will were more likely to want to discuss the topic with a physician (p < 0.01).Conclusions: In this ambulatory patient population attitudes toward living wills were influenced by knowledge and understanding of these documents. Primary care physicians and institutions should develop patient education strategies that enhance understanding of advance directives. [ABSTRACT FROM AUTHOR]

Objective: To describe internal medicine residents' training and performance as well as patients' attitudes and knowledge regarding the rectal examination.Design: Descriptive survey of university-trained internal medicine residents and general medicine clinic patients.Setting: General internal medicine residents' longitudinal clinic at a university-affiliated Veterans Affairs Medical Center.Patients/participants: Ambulatory male veterans attending their general internal medicine clinic, all of whom were over the age of 40 years and had previously had a rectal examination (n = 100), as well as all second- and third-year University of Minnesota internal medicine residents (n = 78) were surveyed using a self-administered questionnaire.Measurements and Main Results: Residents differed in their training in, practice of, and understanding of indications for the rectal examination. Little formal instruction regarding patient comfort had been provided to residents, and many residents had never received supervised instruction in the rectal examination. Patients frequently were uncertain about why the examination had been performed, lacked understanding of the results of the examination, and often had preferences for examination comfort measures that differed from those utilized by their physicians.Conclusions: Increased supervised instruction in the rectal examination in medical training programs is recommended. This should emphasize not only appropriate indications for this procedure but also attention to patient communication and comfort. [ABSTRACT FROM AUTHOR]